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Peter Yanefski

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Invertimos en quienes pueden hacer avanzar la Histiocitosis 💙🔬

En 2026, desde @orasociacion volvemos a convertir los fondos recaudados en conocimiento, formación y colaboración internacional.

Este año destinamos más de 7.200 € a apoyar la participación de profesionales en la Histiocyte Society, la comunidad internacional que reúne a médicos y científicos dedicados al estudio de las Histiocitosis.

También asistiremos y becamos a siete profesiones para asistir a #Rotterdam al congreso anual de la Histio del 27-29 Septiembre

Entre los profesionales becados este año se encuentran:

🇦🇷 Dra. Blanca Diez · Neuro-Oncología · Hospital FLENi @fleni_oficial

🇦🇷 Dr. Jorge Braier · Oncología Pediátrica · Hospital Garrahan

🇦🇷 Dra. María Elena Sossi · Oncología Pediátrica · Hospital Garrahan

🇦🇷 Dr. Guido Felizzia · Oncología Pediátrica · Hospital Garrahan @hospgarrahan

🇪🇸 Dr. Juan Pablo Muñoz · Oncología Pediátrica · Hospital Sant Joan de Déu, Barcelona @sjdhospitalbarcelona

🇪🇸 Dr. Xavier Solanich · Medicina Interna y atención al paciente adulto · Hospital Universitari de Bellvitge @hbellvitge

🇷🇺 Daria Osipova · Biología Molecular · Dmitry Rogachev National Research Center, Moscú

Dr. Dmitry Esveev — Oncología Pediátrica, Kepler Medical Institut, Linz, Austria

¿Cómo seleccionamos dónde invertir nuestras becas?

Priorizamos profesionales con vinculación directa con la Histiocitosis, actividad asistencial o investigadora, capacidad para trasladar lo aprendido a sus equipos y pacientes, representación de diferentes ámbitos de la enfermedad —pediatría, adultos, neurología e investigación— y potencial para generar nuevas terapias.

🏨El conocimiento vuelve al hospital.
🩺Se comparte con otros profesionales.
🧫Genera nuevas conexiones.
🙋🏼‍♂️🙋Y eso llega al paciente.

Desde 2022, OR Asociación ha invertido más de 21.000 € en facilitar esta formación y participación internacional.

OR recauda. OR invierte. OR conecta.

Porque invertir en profesionales también es invertir en las personas que viven con una Histiocitosis.

#Histiocytosis #patientadvocacy #congresointernacional #orasociacion

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Happy Histio Awareness Month!! 🦋 Last year, SOS hosted our first ever Histio Uncovered: an event designed to celebrate histio voices and educate about the different types that impact families worldwide. For our inaugural year, we were honored to be joined by key members of the @histiocytosis_association as well as histio experts for meaningful conversations, education, and story sharing.

Tune in to the speaker sessions on our website and join us next year for our second Histio Uncovered! If you’re interested in being a speaker and sharing your story at the next Histio Uncoevered, DM us and we will help coordinate your slot. Happy Awareness Month! 💙🩵💙 #histiouncovered #weknowhistio

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It's time for another Hello Histio, where the @histiocytosis_association answers some must-know questions in relation to histiocytosis!

The fab Peter Yanefski, Commuication and Operations Coordinator for the Histiocytosis Association, is back to answer this month!

#histiocytosis #histiocytosisawareness #histio #hellohistio

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Another amazing fundraising event in the books for the Histiocytosis Association in New York City. 💙

This year felt extra special because Bradley was able to volunteer alongside us. So meaningful to have family see the heart behind the work we do every day.

Our team worked for weeks, preparing for this event and bringing this year’s theme, “Light the Path to the Future,” to life. We featured patients across all histiocytic disorders through a handmade installation of boxes, photographs, and impactful messages.

Moments like this remind me that we do more than fund science and research — we are a HUB OF HOPE for patients and families navigating incredibly complex medical journeys.

Emotionally exhausted, grateful, and so proud of this team. 💙 #LightThePath #Histiocytosis #RareDisease #Fundraising #TeamWork

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Since I’ve spoken up about my experience with histiocytosis in my family, I’ve had plenty of questions asking me lots about histio! I’m no expert… but the amazing people at the @histiocytosis_association are!

So they’re gonna help me out with answering the questions I get the most! Hopefully you can learn more about histiocytosis, and what the histio warriors, their families, and all the people who combat these disorders, have to deal with.

First up, the fab Peter Yanefski, Commuication and Operations Coordinator for the Histiocytosis Association, tells us more about how we can describe histiocytosis!

#histiocytosis #histiocytosisawareness #histio #hellohistio

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So much to say…2025 has been a journey.

Thank you to those of you who have supported me; I love you dearly. This year was filled with so many moments but some of my favorites include:

• The creation and launch of @stripesofsolidarity & @_rareandreal 🦄
•Interning at one of the coolest growing companies blending health and sports @beyondthegamehealth … @_caclassic 👀
•Landing a job of my dreams at @unitedporphyrias 💜.

I could not have done any of it without these incredible icons: carter _cricket @maryaufish (love you both so much)
@prettysicklupuschick (appreciate all that you’ve done for me this year)

A special shoutout always to my @histiocytosis_association fam💙

A special shoutout to my chosen fam @the_marie_amor @sail_moon21 ❤️‍🔥

Next year, we up the ante. Stay tuned. 🙂‍↕️

#2025recap #raredisease #lgbtq #histiocytosis #hlh #advocacy #awareness #rareandreal #stripesofsolidarity

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*EN👇🏻*Nueva alegría para la Histiocitosis y la ciencia argentina: la Dra. Catalina Lava @catalava fue premiada en 𝘂𝗻 𝗰𝗼𝗻𝗴𝗿𝗲𝘀𝗼 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝗰𝗶𝗼𝗻𝗮𝗹 𝗱𝗲 𝗜𝗻𝗺𝘂𝗻𝗼𝗹𝗼𝗴í𝗮 en Rosario #argentina por su trabajo “Repositioning Indomethacin as a therapeutic agent for LCH: effects on homing and bone homeostasis” -“𝗥𝗲𝗽𝗼𝘀𝗶𝗰𝗶𝗼𝗻𝗮𝗺𝗶𝗲𝗻𝘁𝗼 𝗱𝗲 𝗹𝗮 𝗶𝗻𝗱𝗼𝗺𝗲𝘁𝗮𝗰𝗶𝗻𝗮 𝗰𝗼𝗺𝗼 𝗮𝗴𝗲𝗻𝘁𝗲 𝘁𝗲𝗿𝗮𝗽é𝘂𝘁𝗶𝗰𝗼 𝗽𝗮𝗿𝗮 𝗹𝗮 𝗟𝗖𝗛: 𝗲𝗳𝗲𝗰𝘁𝗼𝘀 𝘀𝗼𝗯𝗿𝗲 𝗹𝗮 𝗺𝗶𝗴𝗿𝗮𝗰𝗶ó𝗻 𝗰𝗲𝗹𝘂𝗹𝗮𝗿 𝘆 𝗹𝗮 𝗵𝗼𝗺𝗲𝗼𝘀𝘁𝗮𝘀𝗶𝘀 ó𝘀𝗲𝗮” junto a los directores del grupo de investigación donde ella trabaja, la prof. Andrea E. Errasti y Antonio Carrera Silva (Instituto de Farmacología – UBA/CONICET). Este trabajo es finaciado en parte por nuestra #asociación. @inbirsar @medicinauba

El mes pasado, en Seattle /Washington, en el 𝗲𝗹 𝟰𝟭º 𝗖𝗼𝗻𝗴𝗿𝗲𝘀𝗼 𝗱𝗲𝗹𝗮 𝗛𝗶𝘀𝘁𝗶𝗼𝗰𝘆𝘁𝗲 𝗦𝗼𝗰𝗶𝗲𝘁𝘆, recibió el 𝗽𝗿𝗲𝗺𝗶𝗼 𝗮 𝗺𝗲𝗷𝗼𝗿 𝗽ó𝘀𝘁𝗲𝗿 𝗰𝗶𝗲𝗻𝘁í𝗳𝗶𝗰𝗼 por el trabajo “𝗘𝗷𝗲 𝗶𝗻𝗱𝗼𝗺𝗲𝘁𝗮𝗰𝗶𝗻𝗮-𝘁𝗮𝗺𝗼𝗹: 𝗲𝘅𝗽𝗹𝗼𝗿𝗮𝗻𝗱𝗼 𝘂𝗻𝗮 𝘃í𝗮 𝗱𝗲 𝗿𝗲𝗽𝗼𝘀𝗶𝗰𝗶𝗼𝗻𝗮𝗺𝗶𝗲𝗻𝘁𝗼 𝘁𝗲𝗿𝗮𝗽é𝘂𝘁𝗶𝗰𝗼 𝗲𝗻 𝗹𝗮 𝗵𝗶𝘀𝘁𝗶𝗼𝗰𝗶𝘁𝗼𝘀𝗶𝘀 𝗱𝗲 𝗰é𝗹𝘂𝗹𝗮𝘀 𝗱𝗲 𝗟𝗮𝗻𝗴𝗲𝗿𝗵𝗮𝗻𝘀 ó𝘀𝗲𝗮”. Desde @orasociacion la apoyamos con una beca —a través de la Histiocyte Society— para asistir y presentar en lo que es considerada, la Escuela Mundial de la #Histiocitosis.

Además, becamos al @dr.guidofelizzia @hospgarrahan para asistir al congreso de Seattle y presentar pósters científicos sobre estudios de histiocitosis en los que OR Asociación también está involucrado.

🏆 Dr. Catalina Lava won at the Immunology congress in Rosario for her indomethacin in LCH study (with A. E. Errasti & A. Carrera Silva, UBA/CONICET).
🇺🇸 In Seattle (41st Histiocyte Society) she won Best Poster. OR Asociación co-funds the project and funded travel for Dr. Lava at what we call World School of Histiocytosis (Histiocyte Society) and Dr. Guido Felizzia (Garrahan). Science without borders.

#cataesunacrack #larompetoda #Histiocytosis #cancer #inmunología #globalhistio #argentina #rosario #tierrademessi #messi #inmunology #research #orasociacion

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✨ It’s Histiocytosis Awareness Month! ✨

All month long, we’re standing in solidarity with the global histio community — honoring every journey, amplifying real voices, and fighting for a future where diagnosis comes faster, treatments are accessible, and care is equitable.

Histiocytic disorders — including LCH, ECD, HLH, RDD, JXG, and Malignant/Histiocytic Sarcoma are rare, complex, and often misunderstood. But here’s what’s not rare: our resilience and our commitment to change. 💙

Throughout September, Stripes of Solidarity will be:
🔹Sharing community stories and lived experiences
🔹 Highlighting resources and advocacy opportunities
🔹 Bringing attention to the urgent need for research, equity, and support

Together, we can turn awareness into action. Together, we’re rewriting the narrative. 🩵

Follow along, join the conversation, and share your story using #iknowhistio

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*EN👇* Septiembre es el mes de la concientización sobre Histiocitosis.

La Histiocitosis es un conjunto de distintas patologías y está catalogada como un tipo de cáncer poco frecuente.

🌏 Cada año, alrededor del mundo, 1 de cada 200.000 infantes y
1 de cada 600.000 adultos serán diagnosticados de esta enfermedad.

🧐El origen de la enfermedad es aún desconocido (está catalogada como huérfana) y se desconoce un protocolo definitivo de cura.

Ante ese escenario de incertidumbre, donde los pacientes y sus familias deben convivir con la enfermedad las asociaciones cumplimos un rol central de apoyo.

En #orasociacion ponemos recursos a disposición de pacientes y sus familiares a través del plan asistencial de acompañamiento emocional.

También colaboramos a nivel internacional con más asociaciones de Histiocitosis y fomentamos la participación para la investigación científica.

Colaboramos con la comunidad de médicos médicos e investigadores a nivel local e internacional para estar actualizados en todos los avances y transmitirlo a los pacientes.

¡únete a Histioguerreros!

🔥 September is Histiocytosis Awareness Month.

Histiocytosis is a group of different pathologies and is classified as a rare type of cancer.

Every year, around the world, 1 in 200,000 infants and
1 in 600,000 adults will be diagnosed with this disease.

The origin of the disease is still unknown (it is classified as an orphan disease) and a definitive cure protocol is unknown.

In this scenario of uncertainty, where patients and their families must live with the disease, associations play a central role in support.

At #orasociacion we make resources available to patients and their families through the emotional support assistance plan.

We also collaborate internationally with more Histiocytosis associations and encourage participation in scientific research.

We collaborate also with the community of doctors and researchers at local and international level to stay up to date on all the advances and transmit them to patients.

#histiocitosis #histiocytosis #spain #españa #barcelona #latam #globalhistio #research #apoyoemocional #cáncer #càncerinfantil #pacientesadultos #orasociacion

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Reflecting on three incredible years of working with the histiocytosis association. This event is more than just a fundraiser; it’s a gathering of hearts, filled with hope and dedication to a cause close to our family. Grateful for the support of my amazing co-workers. And to my husband, whose journey with a rare disease inspired this New York experience. Your unwavering support fuels our mission for a world free of histiocytic disorders. Here’s to making a difference together. 💙 #HistiocytosisAwareness #TeamWork #Gratitude #ECD

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